A trick and some info that might help some of you.
 

Hi everyone,

As some may know, I'm a long term user of IVIG (13 years) and Hizentra (9 mos). I've more or less always had some level of side effects from mild to quite severe. Usually 2 headache days no matter what--and often more. With the Hizentra I was feeling ill and had infusion site pain about 4-5 days after each infusion and I infuse once a week. You do the math. I was not a happy girl. I was also worrying about all the Ibuprofen I was using.

Last month I spoke with my infusion pharmacy and mentioned that I just didn't think I could continue feeling bad 2/3 of my life! I asked if there was ANYTHING else they could recommend. At first the pharm mentioned a new drug, HyQvia, which is more or less Gammagard in sub-q form. It only needs to be used every 3-4 weeks. It sounds interesting, and I will be asking my neuro about it.

In addition to the new drug tip, the pharm also suggested that instead of Benadryl for a pre-med (it just zonked me out and made my dry eyes more dry) I could try any OTC anti-histamine. I tried Claritin prior to the next infusion and was surprised and thrilled to discover I no longer have ANY side effects! My body seems to absorb the Hizentra faster and I no longer get red, sore welts and better yet, NO HEADACHES! It's really great.

I know some of you are plagued with headaches as well. Maybe you should check into using a different pre-treatment, too. I just wish I'd tried this a decade ago! It would have saved me a lot of money I've spent on Ibuprofen!

Happy Holidays, all!